‘I’ve always wanted to join medical school to become a lifesaver but here I am instead fighting, every day, to save my own life’.
An appeal to find a lifesaving bone marrow donor for 21 year old Riya Dandekar has inspired a surge of support from Asians living in Birmingham.
On the 10th March 2014, a few days before her 21st birthday, Riya Dandekar’s life changed forever.
She was diagnosed with a rare blood cancer and told that her best chance of survival was a bone marrow transplant – but first she needs to find a matching donor though the charity Anthony Nolan, which runs the bone marrow register.
Anthony Nolan, now in its 40th anniversary year, was the world’s first bone marrow register. The blood cancer charity has been saving lives for four decades by matching remarkable people willing to donate their bone marrow to patients in desperate need of a transplant.
Asian people are underrepresented on the register which can make it harder for patients from an Asian background to find a match.
Since Riya went public with her story, her community have rallied together in the fight against blood cancer. Anthony Nolan revealed it has seen a four-fold increase in the number of people from Birmingham signing up to their register of potential bone marrow donors since Riya launched the ‘Save Riya Now’ appeal, and an astonishing 960% increase in the number of Asian people in Birmingham who have signed up.
“Up until a few months ago, I was very active,” explains Riya, 21, from Solihull. “I took part in ballet, in martial arts and was in the Army Cadet force. I loved trampolining and spending time with my friends. I was working in an Indian restaurant in Birmingham, and I planned to study medicine and be a doctor, like my parents.”
But her busy lifestyle was stopped in its tracks when Riya was diagnosed with a rare type of blood cancer, called Anaplastic Lymphoma.
Riya had found a lump in her armpit and began to develop unusual symptoms. “My clothes were itching me and my skin felt like it was burning. I had an ultrasound examination and underwent exploration surgical biopsy and eventually was called to a meeting with my surgeon.
“He pulled his chair closer to me and I immediately thought ‘this isn’t good news’. The next few moments went into slow motion. He said “You have lymphoma”. I asked, “Does this mean I have cancer?” And he said “Yes”.
Last month (June 2014), Riya was told that her best chance of a cure is a stem cell transplant. Stem cells are produced by the bone marrow but the donation is usually through blood, not the bone marrow. For her to have the best possible outcome, she needs to find a match urgently.
“I have been through three regimes of chemotherapy cycles, all which have left me feeling completely drained, exhausted, helpless, and I am still not cured,’’ said Riya.
“A stem cell transplant is now my only hope. We need to find a matching stem cell donor as soon as possible. The longer we leave it the harder my body will find it to recover and fight the cancer.”
Riya, who lives with her family in Solihull, now faces an agonising wait to find out if a matching donor has been found through the Anthony Nolan charity.
“I am a 21-year-old who should be out studying, working, partying, holidaying and discovering myself. But I’m not. Instead I am struggling, crying, hurting, and forever waiting.
“I’ve always wanted to join medical school to become a lifesaver but here I am instead fighting, every day, to save my own life.”
One third of patients are able to find a matching stem cell donor in their own family. But Riya sadly found out in June that her brother is not a match for her.
Her family is now turning to blood cancer charity Anthony Nolan, who will search the worldwide registers to try to find Riya a match. “The process of tissue matching is time consuming and feels like searching for a needle in a haystack. A matching donor could come from anywhere in the world. For example, in the past, German donors have matched Asian cancer patients,” said Riya, who is from an Indian background. “The blood group doesn’t need to match in order for you to be a match.”
It is particularly hard for people from Asian and other ethnic minority communities to find a donor through the register, as only 4.5% of the people on Anthony Nolan’s register are Asian.
Sarah Roulstone, Regional Register Development Manager for Anthony Nolan, explained: “It couldn’t be more important that people from these communities sign up to the Anthony Nolan register. For patients from a white Northern European background, their chances of finding a match are 90%. For people from black, Asian and other minority ethnic communities, this falls to just 40%. That just isn’t right, but we can change it and save many more lives by raising awareness and challenging the myths that are out there.
“What many people don’t realise is just how simple it is to be a donor. Registering with Anthony Nolan simply involves filling in an online form and providing a saliva sample. If you are found to be a match for someone like Riya, the donation procedure is usually similar to giving blood.”
Riya is echoing this call for more people to sign up as potential lifesavers.
“When you are in my position, desperately in need of a donor from a similar genetic make-up to yourself, and you are told the statistics, it’s devastating,” said Riya, whose family are now urgently appealing for more people to sign up, especially those from Asian backgrounds. “Even if one life is saved, we will have achieved something.”
“But I haven’t lost hope just yet. We’re campaigning every day to get more people to sign up as potential stem cell donors, and when I get better I still want to get into medical school and become a lifesaver.”